As a Life Scout with BSA Troop 605, he went to Philmont Scout Ranch in Cimmaron New Mexico and hiked over 75 miles with his expedition members and he did it with only what he could carry on his back. Later that year, Scott achieved what only 10% of men in the United States are able to do. Despite his communication difficulties, Scott led a project and went on to become an Eagle Scout.
In April of 2015, we noticed Scott started to shuffle his feet when he walked. We assumed it was due to autism. As the months passed, his hips seemed to be more and more effected. We sought medical attention. His PCP sent him for an MRI. The MRI was clear. Not really knowing what else to do, the PCP sent him to see a neurologist. She ordered a battery of tests, and said "I'm stumped. I would like to refer him to a teaching hospital." We went to Wake Forest first. Their diagnosis was varied from "we think he has ALS" to "we think he has a stretched out central nervous system." Months went by without a follow up. Finally his mom got fed up and took him back to the neurologist and asked for a referral to Duke Neurology.
In the mean time, Scott has lost almost all use of his hands and arms. This makes it difficult for him to steady himself and catch himself with his arms should he fall. On August 20th, while walking into the hospital for physical therapy, Scott tripped on his toes (they now drag), and landed on his chin on the tile floor. In addition to cutting his chin open all the way to the bone, he broke his chin in two. Because of the nature of the break, and the possibility of ALS, we were taken by EMS from Parkridge Hospital to Memorial Mission Hospital. It took 7 consultations from every sort of physician to approve his surgery. You see, people with ALS often don't recover from anesthesia. They end up on a ventilator for long periods, if they come off at all. His surgery was successful, and to everyone's surprise, he was able to come home following surgery that night.
On October 2, 2018, we finally went to the initial appointment at Duke. Duke ALS clinic is a multidisciplinary clinic. You see a speech, occupational, respiratory, physical therapist as well as an engineer, an ALS chapter representative, your doctor, a social worker and the lab people if you need additional blood work. The diagnosis was confirmed.
Scott has complained of tooth pain since his fall. The surgeon thought he had two concussed teeth. The dentist said "I hate to tell you this, but they are not concussed, they are fractured. They will need to be extracted, and you will want to replace them with implants. The average cost is $6500 with the extraction and implants." Scott's dental insurance will not cover the cost. It also won't cover some of the durable medical equipment nor the ramp that he will soon need.
I'm sure some of you think "why would you replace the teeth of a dying child?" The placement of these teeth would impact his ability to speak and eat.
Scott's family are always the first to lend a hand to anyone in the community. His mother is a teacher who has housed abused students, and his father is in retail. They have drained every bit of their savings and any time they have to take off, they have to take off without pay (they exhausted their sick leave last year). I am starting this fund in hopes of easing some of the financial stress they are constantly under. Please consider helping if you can.
This is the only official Go Fund Me page for the Kicklighter family, and it is linked directly to their account. I am Scott's aunt, and I welcome any questions you may have. Some people have asked if Kristi has a paypal account. She does. It is paypal.me/KristiKick
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- Gloria Nock
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